For people with advanced dementia, staying at home helps them to live, and die, better

Palliative care team at the home of Ms Dora Fernandez.VIDEO: SUE-ANN TAN

SINGAPORE - When they were allowed to spend their final days at home, patients with advanced dementia ate better, acted up less, had less pain and needed fewer trips to the hospital, compared with those in homes and medical facilities.

Programme Dignity, Singapore's first palliative home-care programme specially for those with advanced dementia, threw up these positive results on Thursday (Sept 21), and the people behind the effort are calling for it to be expanded as the ageing population here grows.

Dementia is a category of diseases that cause progressive memory loss and worsening mental function. It can take years to reach an advanced stage, by which time a sufferer may be unable to talk or care for himself.

An estimated 80,000 people will suffer from dementia in 2030, compared with 28,000 in 2012.

The $1.5 million programme, funded by Temasek Foundation Cares, ran its pilot from 2014 to 2017, led by Tan Tock Seng Hospital and Dover Park Hospice.

Generally, people with end-stage dementia here are given palliative care designed for terminal cancer patients, in hospices and hospitals.

This is not ideal since both ailments are different, and dementia patients at this stage would not be able to articulate their pain and needs, said programme leader Allyn Hum, who specialises in geriatric and palliative care at Tan Tock Seng Hospital.

"People don't understand that advanced dementia is a terminal illness and more care is needed for those suffering from it," she said on Thursday at a press conference to present the results of the pilot.

This includes personal care in a familiar environment like the home, instead of broad intervention in a hospital that can be frightening for patients.

So, under Programme Dignity, teams of medical social workers, nurses and doctors visit patients in their homes about once a week instead.

Not only do they provide medical help, they also hold activities such as music therapy, and teach caregivers how to recognise symptoms such as why a patient is crying or moaning.

The visits are making a difference.

Close to 400 people took part in the pilot, and 331 were part of a study which found that their quality of life improved by 16.7 per cent, and pain severity went down by almost one-fifth. This was measured via assessment tools answered by caregivers related to quality of life and pain.

Behavioural problems such as eating too little, apathy and disrupted sleep cycles also went down.

Said Dr Hum: "I hope the programme can eventually be rolled out across the island."

To this end, the National Healthcare Group will be working with Dover Park hospice and other community partners to offer such care.

Mr Richard Magnus, chairman of non-profit philanthropic organisation Temasek Foundation Cares, added: "It's not just the patients but the caregivers as well who need support. It's inevitable that the situation will grow and we need to garner societal support for dealing with dementia,"

Dr Lionel Lee, chairman of Dover Park hospice, was also at the press conference at Temasek Foundation Cares at The Atrium@Orchard.

He stressed that care had to be person-centred, and that caregivers also needed support.

"It is not just how you die, but how you live before you die," he said.

"Letting patients live out their days in the familiarity of their homes is what this programme is about. It is about the dignity and quality of life, respecting each person and making every moment matter.